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Friday, July 29, 2011

HEAD FOR THE CURE WALK

Last year we came home from St Jude/Florida right before this event took place.  As a result, we didn't have the time (or energy) to organize a team for the walk.  This year however, we are all about it!  Team Avery will be represented at this fantastic cause made to bring awareness and funding to find a cure for Brain Cancer.  This organization has been in business for 9 years and last year here in KC had a huge turnout of roughly 4500 people!

We'd like to add our support by participating in the walk and showing our TEAM AVERY spirit.  If you'd like to join us, you can register as a walker online and then choose to join the Team Avery team on the 2nd page of the registration.  If you can't be with us physically, we've set a small goal for our fundraising and you can show your support that way!  For us this is really about awareness...funding today for the TaTas and Prostate Cancer are amazing...we'd like to see the same kind of research efforts and awareness be brought to not only Childrens Cancer, but more specifically the Brain Cancer that has made our lives a rollercoaster these last 19 months. 

The walk is on Sunday, August 28th, 2011 at 8 am in Corporate Woods - Overland Park.  If you haven't anything else to do, throw on those Team Avery T-shirts and join us for the morning...once again walking behind our little fighter as she leads the way...ok it might be in a wagon for a majority of the time...

http://public.eventunited.com/HFTC/hftckc/TeamFundraising.aspx?tid=8969


Questions?  Give me a shout!  avery.christiansen@gmail.com


Jenn & Jeremy

Thursday, July 28, 2011

More Hotness in KC

The heat wave continues and  we attempt to stay cool by being indoors....it's even too hot to go swimming!  But Avery has found lots of entertainment inside with Miss Taylor.  Today she enjoyed some fun at Monkey Business and last Friday she spent some time with her buddy Cooper at the train restaurant. 

Uncle Rob is coming to see us this weekend and we'll find something fun to keep us busy.  Avery continues to improve each week in both her speech and her physical strength.  Yesterday she stood up by herself, of course while I wasn't paying attention.  Jeremy witnessed it and the moment he called for me she sat down again.  We are so excited to see her gaining some of that control.  We are a long way from walking for sure, but if we could stand up on our own that would be fantastic! 

Other than that, we have been pretty boring...just the way we like it. 

Jenn

Tuesday, July 19, 2011

Family Weekend

Thanks to his buddies, this past weekend Jeremy was able to participate in the Richard Petty Racing Experience...which basically puts your typical dad behind the wheel of a very expensive race car and allows him to go 120 mph while his wife frantically takes pictures and prays he doesn't wreck.  Luckily, Daddy had his brave little girl cheering him on and the car and mommy both survived the experience unscathed.

The rest of the weekend was spent a little more low key...we did a little sewing, played with our dolls and tried to find mom some chubby clothes for the summer months...none of which were needed the first go round when month 4 was merely a tightening waistband.  We have moved way past that point in this pregnancy and as a result were in need of the chubby shorts and capris to survive the summer.  By the way - uh over this 99 degrees thing entirely...I don't seem to have much pull in the "make my life easier" dept, so if any of you do....a 10-15 degree drop in temp would be much appreciated.

This coming weekend we are excited to see some more visitors and friends and even meet a new buddy.  Spencer showed up in May and we've been anxiously awaiting his arrival.  Avery loves babies and I am a little concerned that she may be in the fight for who gets to hold him next. And honestly who wins when they are competing with the cuteness of a short-haired, blue glasses beauty such as this?  Really ladies...I apologize in advance that she may be hogging the baby this weekend.

I am happy to report that Avery has officially said the word "momma".  Don't get excited people.  She repeats it over and over and over for no rhyme or reason and doesn't associate it with me at all.  "DA" is still produced when asked who I am.  However, the plus side is that we now know she can say it!  Now just making her understand that she only says it for me.....easier said than done.

Please keep some friends in your prayers this week...Natalie was just diagnosed with the same brain tumor as Avery.  She is at the very beginning of her battle and doing well, but needs all the prayers we can muster....Also keep Mary in your thoughts as she goes in for surgery on Monday.  Mary works with me and was just recently diagnosed with Breast Cancer.   Joining this cancer world is a tough transition from everyday life and we hope that others can have the same support system that we've been lucky enough to have.  On on high note-- our buddy Quentin has had great results on his most recent MRI and they are reportedly moving on to the next stages of treatment with no concerns.  Its been a long, hard road for Q and his parents - Stem Cell Rescue is an amazingly tough treatment to come through.  He is a true fighter in every sense of the word and we are so proud of him! 

Jenn

Monday, July 11, 2011

ALL CLEAR!

Avery's results came back earlier than we expected.  She received an ALL CLEAR in her spinal fluid and her MRI -- this is absolutely fantastic -- way to go PRAYER TEAM!! 

Her next scans will be in October at St Jude -- for the next 3 months we plan to live in blissful naivete and ignore scanxiety until the end of September.  Forever grateful for His love....

Jenn

Sunday, July 10, 2011

Jeremy and Avery made it safely to NYC today.  She managed to sleep for a bit on the plane which helped daddy in the 3 hr flight.  They are on their way to the Ronald McDonald house now and then to get a slice of NY City pizza.  Tomorrow's appointments start at 10 am and should be pretty short and simple.  Labs, MRI, LP and a visit with Dr Kramer.  In a cab by 5pm and home in KC by 9:30. 

MRI results will most likely come back as preliminary tomorrow afternoon and the LP will probably come back the next day.  As Avery hasn't had any recurrent tumor, we aren't as concerned about the MRI.  The LP is what makes us nervous.  I will post as soon as we have results.  We appreciate all the prayers tonight!

Jenn

Wednesday, July 6, 2011




An Independence Day....independent of hospitals

Jeremy, Avery and I have spent almost every major holiday in the hospital in the past 18 months...so we were bound and determined to not spend the 4th of July in one this year.  We managed to succeed, although Sloan Kettering threatened that possibility for a while.  Thanks to the 3 day weekend, we managed to make it up to MN and spent some much needed time visiting Team Avery North.  We didn't get to see all those that we had hoped to see, but it was great to see the ones we did. 

Avery spent lots of time in Nana's pool and she absolutely adores the water!  Poor Jersey even had a dip or two thanks to Avery.  The rest of the time she spent chasing the other puppies while they danced around her and barked.  Annoying to mom and Nana, but Avery loved every minute of it.

It was a short trip, but long over due and it was nice to spend a few days out of the heat and humidity that seem to have settled on the Kansas City area.  Monday's drive home left us just enough time to sneak out to Corporate Woods for a fireworks display.  Avery oohed and aaahhed with the rest of us and pointed at every firework.  Needless to say it was a hit for her. 

The C Diff seems to be on its way out....lucky for us the new Nanny Taylor is a nurse and knows all too well the fun that can be had with the C Diff bacteria.  We also experienced our first "Time Out" this past week.  Avery is generally a very good little girl and so far has not required the threat of time out.  However, last Wednesday she was just a bear.  So we put her in time out for a minute....she did not like that one bit.  Stopped her crying though and she was a perfect angel the rest of the evening.  Hoping this doesn't become a regular occurrence, but lets face it - she's a 2 1/2 year old....

Avery is working tremendously hard at her therapy sessions each week.  She is really moving quickly in the speech area and the therapist is really pleased with her progress in such a short time.  She has become much more vocal over the last 3 weeks which is crazy to us.  NO -- she has not yet said MOMMY....but it's coming I swear.  We are now looking to add Aquatic Therapy to her routine as the PT therapist believes this would allow her to let go of some of the fears she has developed of falling due to not walking.  Apparently the farther up from the ground you get, the more fearful you become. 

I know it's hard to believe, but it's that time again....Scanxiety has arrived....
Sunday afternoon Jeremy and Avery leave for NYC for an MRI/LP and visit with Dr Kramer.  As the expense of flying and out of network procedures has started to add up, I will not be joining them.  Monday are the tests and Monday night they will fly back to Kansas City.  We most likely will not get results until Tuesday anyway, so I am not as nervous about not being there.  Still, the fear and anxiety that accompany the looming date with the MRI machine are very real.  Say an extra prayer for us this week as approach this date.  And maybe throw an extra one in there for me, as I can no longer be held accountable for my hormonal responses to daily tasks, let alone emotional stressors like this one.

On that note, we find out on Friday whether Avery will be hosting a Baby Brother or Sister for Christmas this year.  Jeremy will also be getting older on Saturday.  Feel free to harass him about this as his plans include getting up early to work, attending my company picnic, a 3 year old's birthday party and installing a new dishwasher.  Birthdays really aren't what they used to be once you hit 30 and have kids...